Chronic Allergic Throat Swellling

[Jean in Newcastle]

Basic background sketch - I've been on antibiotics this year since mid January for a fairly rare condition called lingual tonsilitis (inflammation and infection of a kind of tonsil that we have at the base of our tongue).  Today I finish up another 3 week course and get checked by the ENT tomorrow.  My throat has been swollen again for the past 3 days even while on the antibiotic.  I'm quite sure it is because we are having glorious summer weather and the allergies to go with it.  Just in case people start to google, I do not have acid reflux.  That has been very thoroughly checked out by a gastro-enterologist and every one agrees that this is tied to allergies in my case.  

 

Actual question - what do I ask the ENT about?  I know all about lingual tonsillitis itself.  5 months has given me ample time to find out about it.  We're trying to treat it medically instead of surgically because it is rare enough that my very experienced ENT has never done the surgery and his partner has done it only 1 time in 30 years.  I don't seem to respond at all to prednisone for the swelling.  He'll determine if there is any actual infection and will probably give me yet another antibiotic (I've been on 11 different kinds between last year and this year).  I'm already doing allergy shots to try and limit my allergic load.  I'm on albuterol because the inflammation makes it harder to breathe.  Should I ask about seeing an immunologist?  I don't know what to do.  I try not to go outside.  I haven't even taken a walk in months because of all of this.  Every time my throat starts to swell again I wonder if it is going to stop.  (I do have an epi-pen).  

[Guest]

Oh man, I don't even know, I just had a reaction myself about half an hour ago because of cross contamination on a normally safe food for me (it happened at the factory. Oh well).

 

I would probably be asking about potential therapies to help day to day with sensitivities, and longer term eradication of the reaction if at all possible.

 

For example, I was told to take not only benedryl, but zantac and nexium when a reaction hits. Those work synergistically together to stop it more effectively since my symptoms tend to be oral and GI, too. Localized swelling, numbness, blood pressure drops, and that ever so pleasant cold wash of doom.

 

An immunologist might be a better step, but I was very underwhelmed with mine and she was board certified in her field and very highly sought after. A good rheumatologist is a better fit for more general inflammation going with that allergic response in your tonsils.

 

Big hugs!

[Guest]

Oh, and with that synergistic med combo I was able to avert epipen use. I had it uncapped and everything, but after a few minutes things didnt'the progress further. The benedryl alone wasn't touching it.

[HeWillSoar]

Have you had allergy testing?  Could you have a food allergy?  I have something that sounds a little similar but not the same.  I had a sore throat for over a year that kept getting worse, plus stomach issues and a swollen lymph node in my neck, and it turned out I have an allergy to gluten.  Maybe if you could pinpoint what you're allergic to, that might help.  Or maybe you've already done that. 

[snickerplum]

Have they discussed what specific allergies this might be related to? Have you seen an allergist? I would think an immunologist might prove quite beneficial.

I'm sorry you're dealing with this, especially with unanswered questions.

I wish I had more words of wisdom. My daughter's situation with allergies and reactions (however different from yours) has shown me the extreme frustration of not being able to fix or treat a problem. I hope your appointment goes well!

[Jean in Newcastle]

I've had allergy testing.  I am taking allergy shots for mold/mildew and for pollens.  I tested negative for all food allergies.  However, I have been off of gluten since before Thanksgiving and have found that helps with my overall joint achiness to some degree (but not totally).  

[Slartibartfast]

It could just be the trees blooming that are bothering you, trees are the worst.

 

You might ask a rheumatologist but the ENT might have some ideas as well.

[HeWillSoar]

:grouphug:   I hope you get some answers and a solution soon.   I think you have to just keep trying to find the answer even if that means seeing a bunch of different doctors.   This must be really distressing for you.  Or at least it was for me when I was trying to figure out what was wrong and not getting any answers.  It was just "try this medication."

[aaplank]

Have you been tested for Eosonphilic (sp.?) disorder? During an endoscopy they take a small sample of your esophagus tissue to biopsy. Here is more information. http://www.apfed.org/drupal/drupal/what_is_eoe

[mominco]

Jean my son sees an immunologist every 3 weeks and most of these Dr's are very good.They do a lot of research.So one way to go.

The other option is an infectious disease...I know this may seem silly but since you have been on so many antibiotics and seem to be

dealing with an infection I am suggesting this.

In my opinion ID Dr's look at the whole body as opposed to say an ENT.So see if you can find one.

I don't know your location but if my guess is you are in the PNW area.But if you are anywhere close to TX ping me I can give you specific names 

of both specialists !

:grouphug:  you have been going through so much! HTH

[Jean in Newcastle]

Have you been tested for Eosonphilic (sp.?) disorder? During an endoscopy they take a small sample of your esophagus tissue to biopsy. Here is more information. http://www.apfed.org/drupal/drupal/what_is_eoe

I did have an endoscopy.  I thought there was a biopsy but I don't know what they tested for.  Maybe that since I was having laryngeal spasms.  

[Jean in Newcastle]

Jean my son sees an immunologist every 3 weeks and most of these Dr's are very good.They do a lot of research.So one way to go.

The other option is an infectious disease...I know this may seem silly but since you have been on so many antibiotics and seem to be

dealing with an infection I am suggesting this.

In my opinion ID Dr's look at the whole body as opposed to say an ENT.So see if you can find one.

I don't know your location but if my guess is you are in the PNW area.But if you are anywhere close to TX ping me I can give you specific names 

of both specialists !

:grouphug:  you have been going through so much! HTH

Yes, PNW.  I've thought about infectious disease as well.  

[Jean in Newcastle]

I just realized that I had my allergy shots last night.  That's probably why today is worse.  

[Carol in Cal.]

When I used to take allergy shots, they actually increased my allergies to dogs to the point where I have to take Allegra to be around them.  I wonder whether your allergy shots are really helping or not? 

 

Also, have you tried allegra?  It's non-drowsy, and it works better than claratin for pollen for me.

Plus now it's OTC which is convenient.

 

 

[Jean in Newcastle]

When I used to take allergy shots, they actually increased my allergies to dogs to the point where I have to take Allegra to be around them.  I wonder whether your allergy shots are really helping or not? 

 

Also, have you tried allegra?  It's non-drowsy, and it works better than claratin for pollen for me.

Plus now it's OTC which is convenient.

I've stopped taking Allegra and will be asking the ENT tomorrow about using something else.  Allegra made me more congested  :confused1:  :confused1:  and kept me up all night,  Not a good thing.  

[Junie]

Just grasping at straws here...

 

Have you checked into Oral Allergy Syndrome?

[klmama]

Have you removed nightshade plants from your diet?  It may not make the difference removing the gluten did, but for some people it helps reduce inflammation.

[Jean in Newcastle]

Have you removed nightshade plants from your diet?  It may not make the difference removing the gluten did, but for some people it helps reduce inflammation.

Yes, for 3 months.  It made no difference.  Now I do have very limited nightshades very occasionally.  

[Laurie]

Some questions, for you and/or the ENT dr:

 

*Do you have an air purifier in the house? 

 

*I was wondering if it would help to drink only cold liquids to help with the swelling and avoid hot beverages entirely.

 

*Would it help you to wear a mask outside so that you could get out more?   Sometimes I see people wearing masks outside and I've assumed that they've got bad allergies.   

 

I hope you can get some relief soon!

[Jean in Newcastle]

Some questions, for you and/or the ENT dr:

 

*Do you have an air purifier in the house? 

 

*I was wondering if it would help to drink only cold liquids to help with the swelling and avoid hot beverages entirely.

 

*Would it help you to wear a mask outside so that you could get out more?   Sometimes I see people wearing masks outside and I've assumed that they've got bad allergies.   

 

I hope you can get some relief soon!

Good questions.  

 

Yes, we do have an air purifier in many rooms (bedrooms and living room).  We don't have an entire house one.  

[SerenityNow]

This may be irrelevant, but since you mentioned taking Allegra, I'll go ahead with this idea.  I've decided that most of my "allergy" problems are not so much allergies, but a low histamine tolerance in general.  There are many high histamine foods that I can no longer eat because they cause regular allergy symptoms (coughing, sneezing, itchy eyes) and also things like inflammation and constricted breathing.  At the time I started looking into this I was taking Claratin every day, and it had gradually stopped providing any relief.  Then I read this interview on The Low Histamine Chef:

 

http://thelowhistaminechef.com/dr-janice-joneja-histamine-intolerance-interview-pt2/

 

(the transcript is down below the two video screens)  After reading this (especially the very first question) it really made me wonder if the antihistamines were making things worse.  I spent a couple of horrible weeks getting off the Claratin, and after a while my body really did start to stabilize a bit.  I still have lots of problems with histamines, but they feel more under my control.  I definitely have less inflammation now.

 

Anyway, you probably know all this, because I know you're a great researcher, but maybe it will help someone else who is wondering why their antihistamines aren't helping more.   :001_smile:

 

Good luck, Jean.

[Tap]

Have you tried a nasal steroid like Nasacort or Flonase (fluticasone), for a more topical approach to help the inflammation?  They are both otc nasal sprays, but I have heard of them being used orally for uncommon/off lable uses.

 

Another one to try may be Astelin.  It is an antihistamine spray so you bypass some of the side effects of the oral meds. (RX only)

 

Have you tried zantac? It is an H2 blocker which is used for acid refulx and gerd, but is actually histamine blocker (instead of an antihistamine).  It is often used in addition to allergy meds to boost the effect a bit. 

 

If they suspect allergies, I would talk to the doctor about trying a mixture of Maalox and Benadryl for a swish and spit treatment.  The Maalox makes the Benadryl stick to you mouth.  The Benadryl may have some more benefits of a topical treatment as opposed to oral. 

 

 

If no to any of those, they may be something new to discuss with the doctor.

 

 

[Jean in Newcastle]

Good suggestions, Tap.  I have Astelin but the other things are new ideas.  

[Guest]

Don't forget your handy dandy essential oils first aid kit! It might make your reaction worse, but that's just part of the miracle curative properties!

 

 

;)

[Joules]

Jean, I don't post much but I think of you often as I fight the same sorts of battles for the last 15 years (one mysterious auto-immune after another). I was hopeful for the doxy, because it has helped my pain some.

 

I agree with Tap's suggestion of benadryl directly on the throat if you can make it stick. Liquid benadryl definitely causes contact relief in the mouth and throat if you swish and gargle it. It's my first attack before epi. You may be able to do this with kid sized doses throughout the day.

 

The doc has added both Astelin and Qvar for me. I don't know which but one of them is helping some. I can't remember if you tried a inhaled steroid like Qvar, but the stuff does land in the throat and may have a contact effect. Nasal steroids might also. Although they aren't supposed to go down the throat, somehow they always do for me. The Astelin does cause some antihistimine effect in my throat like benadryl.

 

I hope this is a passing problem for you. Sometimes my immune system seems to hyperfocus on one little part of my body for a while and then move on. Are you behind on any immunizations? Nothing like a full blown auto-immune attack on the injection site to distract it, if you don't need the use of an arm for a while ;-)

[Jean in Newcastle]

Not behind on immunizations though I think I'm supposed to have another round of hepatitis shots in a month or so.  

 

Yes, it seems to be hyperfocused on the throat.  Over 3 months last year and 5 months and counting this time.  

[Plateau Mama]

Hugs Jean.

 

I have a fabulous ENT if you want another opinion. I also have a great naturopath who's a full MD. She helped us figure out intolerances that didn't show up on an allergy test but had scary symptoms. Let me know if you'd contact info for either. The Naturopath is in Issaquah Highlands and the ENT is in Bellevue.

[mominco]

Jean,

Just checking to see how you are doing.How is the swelling?I hope things have improved ! :grouphug:

[Jean in Newcastle]

Thanks for checking in on me.  I'm a bit more hopeful.  He said that I still have signs of sinus infection but no streaking in my throat signifying infection there.  So we're going to try a new(ish) thing that all the ENT's are doing  ;)  - a nasal rinse with an antibiotic and an anti-fungal and a steroid in it.  I'm cutting edge, baby!  I'm still swollen but he agrees that at this point the swelling is most likely due to our beautiful spring.  

[prairiewindmomma]

Good luck.  It's a miserable experience.

 

I don't have much to offer, except that allegra was weird for me, but zyrtec has been good.  The Costco generic is $15/year.  I take it daily, and then do liquid or chewable benadryl when I begin to have an oral reaction.  I think the pp advice about adding h2 inhibitors is a good one too. We use ranitidine OTC.

[gardenmom5]

  I'm quite sure it is because we are having glorious summer weather and the allergies to go with it.  

 

 

Actual question - what do I ask the ENT about?  I know all about lingual tonsillitis itself.  5 months has given me ample time to find out about it.  We're trying to treat it medically instead of surgically because it is rare enough that my very experienced ENT has never done the surgery and his partner has done it only 1 time in 30 years.  I don't seem to respond at all to prednisone for the swelling.  He'll determine if there is any actual infection and will probably give me yet another antibiotic (I've been on 11 different kinds between last year and this year).  I'm already doing allergy shots to try and limit my allergic load.  I'm on albuterol because the inflammation makes it harder to breathe.  Should I ask about seeing an immunologist?  I don't know what to do.  I try not to go outside.  I haven't even taken a walk in months because of all of this.  Every time my throat starts to swell again I wonder if it is going to stop.  (I do have an epi-pen).  

 

 

we are?  okay, it hasn't been raining (much), I guess it's been decent. dh has turned the a/c on.  (it's not that hot - I'd rather have fresh air from open windows.)  currently I'm sitting here looking out at all the overcast.  (I Just remember memorial day weekends when it was in the upper 90's and there was no snow at paradise.  not this year.)

 

(jean and I live fairly close to each other.)

 

have you (or your dr) checked with ent's associated with the U for someone with more experience with this?  it is a major teaching/research hospital, someone there may know more.

 

have you been checked for yeast overgrowth?  with antibiotics going on for that long, it can completely mess up your gut and your immune system.  (and every other function related to healthy gut bacteria.)

[Jean in Newcastle]

I'm on pretty high doses of probiotics plus Florastor (which is a beneficial yeast that is not candida).  Plus - kombucha, fermented foods, cultured yogurt and kefir etc.  So I'm trying really hard on the gut flora thing.  

 

I'm pretty comfortable with my ENT.  We've actually decided that I've had this lingual tonsillitis thing going on for some time which no other doctor or specialist could figure out until he caught it because they kept thinking it was my heart or lungs (because I feel choked).  I  think someone asked up thread about a second opinion.  I did go to another ENT over a month ago for a 2nd opinion and he confirmed everything this ENT said.  The one thing I like about this ENT is that even though he is an MD, he is up on and will mix some alternative treatments with the allopathic ones.  

 

And yes, this weather is perfect!  I don't like too hot or too cold so this, as Baby Bear would say, is "just right". 

[gardenmom5]

 I  think someone asked up thread about a second opinion.  I did go to another ENT over a month ago for a 2nd opinion and he confirmed everything this ENT said.  The one thing I like about this ENT is that even though he is an MD, he is up on and will mix some alternative treatments with the allopathic ones.  

 

And yes, this weather is perfect!  I don't like too hot or too cold so this, as Baby Bear would say, is "just right". 

 

I didn't mean for a second opinion per se, but someone who might have more experience with this particular surgery.

 

I'm currently on my 2nd round of antibiotics in less than a month.  oh, joy.

what probiotic are you using?

 

 

eta: I'm sure if I were well enough to go garden - I'd love the weather. . . . . .

[Jean in Newcastle]

I spent a lot of time on some medical forums the other day reading stuff by people with lingual tonsillitis.  It was extremely depressing.  Some people had had the surgery but only one out of about 50 reports on the surgery was a good one.  All the others spoke of hemorrhaging, intense pain and swelling that was even worse than before and when it was finally over. . . the thing growing back even worse than before.  Now it may be that all the successful people didn't bother to come to medical forums to talk about it, but it was not happy reading!  The thing is, I'm conflicted anyway on the surgery because I'm not totally sure that I want part of my lymphatic system cut out since it is there to help deal with immune issues .  I'd rather figure out what is overloading it and causing it to be infected in the first place.